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Treatment Responses in SDH-deficient GIST

Patient-reported Treatment Responses in Known/Likely SDH-deficient GISTS: An Analysis of The Life Raft Group Observational Registry

Authored by LRG Data Analyst Jerry Call*

Cover of the August LRG Science BulletinThis study highlights the very unique research role that defines The Life Raft Group.

When we think of cancer research, what immediately comes to mind are formal clinical trials backed by scientific laboratory breakthroughs.

More recently, cancer scientists have been looking to big data sources including hospital-based electronic health records and health insurer records. Although this data has expanded our base of information, it is generally based upon a foundation of billing systems, and often lacks robust quality controls as well as the ability to track patients should they leave the hospital or insurance jurisdiction.

To complement both traditional clinical trial data and the aforementioned electronic health records, The Life Raft Group patient registry (GIST/PRIME) is based on data provided by patients with their unique perspective but is backed by diagnostic and treatment reports to assure accuracy in patient reporting. The fact that the data is provided by patients means we are able to follow their medical treatment journey across institutional and national boundaries.

Recently, the LRG has been expanding the utilization of this database by creating a number of critical collaborations with key researchers and the world’s most prominent cancer institutions.

– Norman J. Scherzer, Executive Director, The Life Raft Group

Read LRG Science August

*Additional authors: Yu Wang, Sara Rothschild, Denisse Montoya, Pete Knox, Mary Garland, Carolyn Tordella, and Norman J. Scherzer of the Life Raft Group